Atypical lobular hyperplasia: Did you have surgery?

Hello, I am 44 years old just found out I have atypical hyperplasia. How many of you on here had the surgery to remove it? How many just kept doing the mammogram every 6 months and taking tamoxifen? Did tamoxifen did you bad or any side effects. Any comments on this would be so helpful. Thank you.

Estrogen to me is important
I went off the Tamoxifen and as studies show topicsl estrogen doesn't hurt went on that
Best wishes

I have LCIS as well as another neoplasm
I believe there is a need for much more research and better treatments
Watchful waiting seems best
along with MRI mam and clinical exam for me
I had surgical biopsy but thats all

hope you have healed welI, that is a lot for you with little ones running around.. I had a lumpectomy that they found the ALH. I had considered another (I had one at 29 thirty years ago) mastectomy but was talked out of it by my husband because of heart issues I am going through too and worry about how much it would take out of me. It took three months to get cardiology approval for the lumpectomy. The dr gave me option but wasn't pushing it. My radiologist I saw Monday said the radiation will kill any ALH so that was good news. My first treatment is 18th.

I hope you have healed welI and are happy with your reconstruction. that is a lot for you with little ones running around.. I had a lumpectomy that they found the ALH. I had considered another (I had one at 29 thirty years ago) mastectomy but was talked out of it by my husband because of heart issues I am going through too and worry about how much it would take out of me. It took three months to get cardiology approval for the lumpectomy. The dr gave me option for mastectomy but wasn't pushing it since I was stage 0. My radiologist I saw Monday said the radiation will kill any ALH so that was good news. My first treatment is 18th.

hi @wendles. I was diagnosed with ALH last year, after I had a lumpectomy. originally my lump was biopsied and thought to be a phyllodes tumor but after lumpectomy, it was found to be a fibroadenoma. the ALH just happened to be in the border of tissue that they removed with the lump. I was offered tamoxifen but, and I kind of feel selfish about this, I was 37 at the time and didn't like the idea of going through menopause that early. So I asked about mastectomy, specifically a prophylactic mastectomy with reconstruction if possible. the oncologist and general surgeon told me that it was an option. 6 months after my lumpectomy I had a bilateral prophylactic mastectomy with reconstruction. I will be post op 1 year in November 2022.

I was not offered radiation therapy for the ALH. Not sure if that is something that is normally offered.

I am also new here and was just looking to view other experiences. I'm a mom of 3 and a family medicine doctor.

Even though a cancer diagnosis and a pre-cancer diagnosis are not the same, I believe the same feelings are triggered when given either diagnosis. Fear, denial, waiting for more info, what do I do next, how bad is it...the list goes on and on... No one is ready to hear it! It sounds as though you are not being heard when you bring up your diagnosis to others. It's hard for others to understand what a non-cancerous diagnosis like ALH or stage 0 cancer really means since it's "not cancer".... and a "what are you worried about" type response and attitude (believe me I know because I have received the same reactions) , but hearing the diagnosis is still devastating and we just want to be heard or share our feelings/stories. Good luck with your appointment regarding your reconstruction options and hopefully you'll get some good options! 🙂

Thank you so much for your thoughtful response. Your information and personal experience are very helpful.
I am meeting to discuss reconstruction possibilities with a plastic surgeon within the next week. A lumpectomy is possible but the success is 50/50 and the breast area impacted, while small for some people, would be larger than optimal for my size.
My preference would be to do the lumpectomy however the concern is that if this is done that it would limit reconstruction options if this didn't work. Something to talk to the plastic surgeon about I know.
This website has been so helpful. Since DCIS and ALH are either stage 0 or pre-cancerous, it has made this whole thing hard to discuss. The few people I have mentioned my diagnosis to always say "good thing you got this early" - and then go on to provide details about a friend or themselves who had a later stage cancer and went through various treatments and thankfully ended up fine and have an almost unnoticeable scar from the surgery. I then say yes, that is amazing, and then never want to mention anything to anyone again. I wonder if anyone else feels like this sometime?
I hope all goes well for you with your decision on what to do with the ALH - this must be difficult after just going through the DCIS. The what ifs are always hard. My best wishes go to you.

Hi @dmart37 I have not been in this situation exactly, but what your dr is saying does make sense. I had invasive DCIS which bumped up my stage to stage 1, which required an oncologist to become involved. That was a year ago and now I have been diagnosed with ALH in my right breast and I want it removed. I totally understand your confusion around your diagnosis and not knowing which questions to ask. I would ask if an oncologist is warranted, what are my treatment options, how much of the breast is involved, is a mastectomy my ONLY option, is reconstruction after a mastectomy an option….? I hope this helps and I wish you well! 💗

Hi, I was diagnosed with DCIS in my left breast with focal microinvasion. Then was sent back for a second biopsy, also the left breast, for a nearby small area that was then diagnosed as ALH. The surgeon has informed me that any lumpectomy would include removal of the DCIS and the area of ALH. Because I have small breasts (small A cup), the surgeon is actually recommending a Mastectomy vs. lumpectomy. Since I have Stage 0 and an area of pre-possible cancer this is very hard to accept and understand.
Has anyone been in this situation? Does this make sense.
My surgeon is from a well-known and respected hospital. I do trust the surgeon but it is difficult because I don't even know what questions to ask.
I also wonder that I have not been referred to an oncologist - does that make sense as well? Perhaps since I don't actually have a malignancy there is no reason for an oncologist?
Thank you